Sydney Gill, a proud Canadian, has been on a long and painful road to recovery from Thoracic Outlet Syndrome (TOS). Before her experience with this condition, Sydney was active with an exceptional passion for horseback riding. She enjoyed taking care of her chickens and competing in equestrian events in Grimsby, Ontario. Sydney’s life took a turn when she started experiencing pain in her right arm. As she got older, the pain continued to grow and disrupt her life, leading Sydney and her parents to seek medical care.
Sydney first began experiencing symptoms of thoracic outlet syndrome when she was nine years old. She felt radiating pain in her right arm that grew and moved to other parts of her body over time. Living with the symptoms for six years was challenging. At 15 years old, the severe pain in her right arm became constant, which prompted her parents, David and Heather Gill, to seek medical help for their daughter. The pain then spread to her neck, continued down each arm and radiated across her chest.
Sydney underwent many tests and was diagnosed with bilateral neurogenic thoracic outlet syndrome. This is the most common form of thoracic outlet syndrome that occurs in 90% of TOS patients. Neurogenic thoracic outlet syndrome is a condition that can cause symptoms of pain, numbness and tingling, discoloration, temperature changes and weakness in the neck, upper chest and upper extremity. These symptoms are the result of compression and/or anatomic abnormalities within the thoracic outlet, leading to irritation of nerves. There are two other types of TOS—venous thoracic outlet syndrome, which is rare, and arterial thoracic outlet syndrome, which is very rare.
Between 2015 and 2017, Sydney underwent three brachial plexus surgeries in Ontario. After each surgery, her symptoms went away for a short period but eventually returned. Dedicated to helping their daughter, David and Heather researched non-invasive options for TOS, from physical treatments to oral and transfusion drugs. Nothing seemed to work.
After round and round of failed treatments, Sydney’s physical and mental health took a toll. Her symptoms were so severe, that she was no longer able to attend school and participate in most of the activities that she enjoyed doing. By the end of 2018, Sydney had exhausted all treatment options available in Canada. The family felt hopeless knowing that there was nothing left to do but seek counseling for Sydney to help her learn to live with a lifetime of pain and disability.
Sydney Gill, far right, walks with her family near their home in Grimsby, Ontario, Canada.
Heather and David refused to give up. They wanted to give their daughter the best possible chance to live a fulfilling life. Determined to find a solution to their daughter’s suffering, they discovered Dean Donahue, MD, board-certified cardiothoracic surgeon, associate professor at Harvard Medical School and the director of the Thoracic Outlet Syndrome Program at Massachusetts General Hospital. Dr. Dean Donahue is an accomplished surgeon who has been with Mass General since 1987 and is a leading national expert in the diagnosis and treatment of Thoracic Outlet Syndrome.
When first meeting Dr. Donahue in 2018, Sydney and her family felt immediate comfort. Dr. Donahue spent over an hour listening to her story and expressed an understanding of the family and their concerns in a way that previous specialists that attended to Sydney were not able to.
“She was really in a lot of pain to the point where she needed a wheelchair to get around,” says Dr. Donahue. In his evaluation of Sydney, he discovered a broken rib in her back that was causing her immense discomfort and that she had cervical ribs that were contributing to her TOS symptoms, which previous doctors had missed.
“There was this moment of feeling like maybe there’s hope, maybe this person could help us,” Heather says. “The folks at Mass General are so incredible. They have a team that looks after all out-of-country patients and they treat you really well.” After years of dealing with this mysterious condition, the Gill family finally felt understood.
On May 22, 2019, Sydney had the first of two surgeries at Mass General. Moments before the big operation, she felt very emotional, and Dr. Donahue was there to comfort and reassure her. This made Sydney trust him and decide to move forward with the surgery. Reoperations for TOS are more complex than a first-time surgery. Dr. Donahue operated on the right side of her body for seven and a half hours. He informed the family that it would be a long and painful recovery, due to the time required for the nerves to heal, and it would take several months for her to see signs of improvement.
After 10 days of recovering at Mass General, Sydney returned home. As projected by Dr. Donahue, she started noticing significant improvements 18 months after her surgery. “Sydney began to participate in her life more and more. [That reinforced] with her that that surgery in Boston was the right thing to do,” David says.
After the successful surgery on her right side, Sydney returned to Mass General in December 2021 for surgery on her left side. The surgery was equally complex as the first, and recovery was just as long and painful. She spent a long time in the hospital post-operation, due to complications resulting from severe scarring from having had prior surgery.
After recovering, Sydney was glad to return to her family and dog, Trooper, in Grimsby, Ontario.